Part 6: Philosophies that carry young people with disabilities through hard times

We are a group of young people living with disability who are passionate about making changes. Like anyone, sometimes we go through some pretty rough times. We’ve all had experiences of when people have said thoughtless or discriminatory things, or when they have been patronising.

 

While at school

  • When I was in year 7 I was the best in spelling but I was put in the ‘special class’. They said that they wanted to make the class smaller. It made no sense.
  • I was asked if I wanted to attend the sex ed class or if I wanted to attend something else. What’s going on with that?

 

Out on the town

  • I was out with my sister at the theatre and they had to remove a chair for me and then they had to do the same for someone else who was in a wheelchair in front of me. Then the guy walked past me and said ‘it is one of those nights tonight’. Apparently guys in wheelchairs are not meant to go out? Sometimes people do not think about what they are saying.

 

There are other things too: 

You get stared at and this makes you feel awkward.

One day when my limp was quite bad I was yelled at on the street, they swore at me, telling me to walk ‘properly’ and that really affected me.

A friend of mine with MS walks in a wonky way and someone asked her once if it wasn’t too early to be drinking. And when I went to nightclubs they used to think I was drunk even though I was sober. People didn’t believe me when I explained and that made it worse. 

 

If your disability is invisible:

Someone might say on public transport, ‘you can stand up’. When really you can’t.

These things hurt your feelings. They make you not want to go out anymore.

For some of us, it brings a shock and surprise. I don’t cop it all the time but when I do it is like @@@@ did that just happen?

For others, we get used to it which means it is not a surprise.

 

What other people do

When hard things happen, we often turn to friends or family. How they respond makes a difference:

  • What doesn’t work is when people try to tell me what to do or say, ‘I know how you feel’. Even if I experience something similar I don’t say, ‘I know how you feel’, because everyone is different. Saying ‘I am there for you’ can mean a lot.
  • When someone listens and takes it seriously, but also looks to see the funny side of things. That works for me.
  • When I went through some experiences, friends showed me pictures of dogs on a website. They were cute and funny and made me laugh!
  • Taking some time out and trying to put it into perspective helps me. Sometimes when you say it out loud it sounds ridiculous and you can see that it is not a reflection on you but on the person who said it.

And we each have philosophies that get us through.  

 

Adversity is power
I draw strength from having got through hard times before. Power through adversity is a self-taught thing. Everything we learn in life takes time and effort. Whether it is learning something new or painting a picture, it’s about perseverance. It’s about realising that if you have the death of a family member, once you have learnt to deal with this, then you can help others who are dealing with loss. Your grief now can help you and others with difficulties that arise in the future. Adversity is power.

 

We’re in this together

It took me a while to realise that it’s okay to ask for help, to rely on networks of family and friends. I was still walking then. It was a year after I was diagnosed and I was going through a period of remission. I wasn’t using my walking stick. We were down staying at Port Willunga for three weeks with friends. There was a time at the beach when I thought why not go for a swim. So I did. The waves did not seem too rough. But when I went into the water I realised this was a bad idea and the waves were strong and I found it hard to stand up. They were small but powerful and kept knocking me down. So I had to get my best mate and his dad to carry me out of the water and onto dry land. This was a sign of how to get through the hard times that lie ahead for me. The waves are going to keep coming but if I am standing with my family, my friends, I’m not going to be scared. I have their support with me. I am not scared because even if I get knocked down by the waves, with their help I can get out of the water and on to dry land.

There’s a saying about this:

If you can’t walk you crawl, if you can’t crawl find someone who can carry you.

 

Taking action

We all deal with discrimination in different ways: 

  • Trying to understand can be helpful sometimes, but so can a bit of a FU attitude!
  • Trying to make a difference and tackle some of the issues head on can turn it into a positive thing.
  • Seeing other people take action is a powerful thing too. Sometimes this happens on the internet, people try to raise awareness and I really appreciate that. It’s important to know that your government and community actually care about your wellbeing and enjoyment of your life.

 

Part 7: tips for those making a new life in Adelaide— from young Syrians

This Post Has 5 Comments

  1. Sandra Owen

    I think our world is very slow in accomodating that which should be just the norm without fuss. I was taken aback when I heard that some theatre requirements are that a person over a certain size cannot go to most regional hospitals as somehow having the right structured bed is difficult to have as the normal. I think shaming people by singling them out is an undermining tool that is often used within our system with the understanding that somehow the shamed will benefit from that attitude.

  2. Patricia

    as a mother of a child with a disability I understand what the young people spoke about, the difference with my daughter is that she has an intellectual incapacity, so people assume she is “normal” and try to talk to her, when she doesn’t respond or she responds but in a monotone way, they realize and then start talking as if to a baby or they disengage from her.

  3. sylphillipsayre@yahoo.com.au

    Thank you, for sharing this video and to the people who share their life experiences / stories. Hearing people’s stories and experiences helps me as a person and as a professional to be more mindful and supportive.

  4. Beata

    Great! This “we are in together” and all other tips are really fantastic! O=Not only people with certain disabilities need help from family, friends, but also I think this is relevant for all human beings.

    After all, who can say that their are away of waves of life? Thanks to these young people!

  5. Julia Farr Youth Peer Support Network

    Today we watched your video.

    Some of us clapped when it finished. Some of us said, ‘Sounds good!’

    We all liked different things:

    • One of us liked the story of when the waves were too strong. That story is a reminder for all of us of what lies ahead and how we can get through hard times. It’s like a message of resilience.

    • I liked how the video talks about the ways you deal with people’s attitudes. We have to do that a lot. Sometimes I want to educate people. Other times I just want to go away … or for them to go away!

    • I liked how the video was not censored. When people react to us in public it is not censored so our feelings shouldn’t be censored either . As our culture becomes more sanitised, then it gets harder for those of us who don’t fit a sanitised world.

    • I liked when it said ‘adversity is power’. Sometimes pain and anguish can be a resource. That’s not necessarily the case for everyone. It’s not a should. Everyone is different.

    • And one of us really liked the tram – anyone can ride on a tram in a wheelchair or not.

    Thank you for your video. It reminds us that we are not the only one these things happen to.

    We also have ways of dealing with the loneliness of winter, or with other hard times.

    Here are some of our tips:

    1. Some of us use creative writing, acting or music.

    2. Having a support network around us makes a difference.

    3. We’ve tried to find an outlet that works for us. We used trial and error to do this.

    4. More than one of us watched horror movies. These can make us feel better. In some way it’s like eating your feelings! Maybe one day we can make another film what a tub of ice-cream with ‘eat your feelings’ on it .

    5. A cat in winter can help to keep you warm. Its body heat can warm your legs and a cat can also provide entertainment. It’s good to have someone to laugh at.

    6. A cat or dog is also someone who can listen to us. A Labrador doesn’t necessarily talk back to you but it does know when I am upset. She comes up to me, looks at me, wanting to help. And she listens. Actually any animal can do this, not just pets. One us finds birds very comforting.

    These are just some of our ideas for getting through winter … or for dealing with hard things. Some of us are looking forward to when it gets hotter and we want to have a cool drink or ice-cream.

    And we are also looking forward to what other people think about your video … people with disabilities and people without disabilities.

    We look forward to hearing.

    Today we watched your video.

    Some of us clapped when it finished.

    Some of us said, ‘Sounds good!’
    From the Julia Farr Youth Peer Support Network.

    PS. Angus, we don’t want to give you too much of a big head but your delivery was profound and the message was really significant.

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